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my experiences and daily life as a parent of deaf children

Eden’s Journey

From the previous posts, you may be a little confused. I am the mom of 3 deaf girls, but have also said that in the middle of this year, I was grateful and confident that Eden could hear. Let me explain…

Our 3rd daughter Eden is 21 months younger than her sisters. My pregnancy with her and her birth, were again, largely uneventful. She too, was not offered early neonatal hearing screening. Again she was “colicky” which was challenging, but otherwise achieved her developmental milestones on par for her age. Actually, her language development was ahead of the pack. Her first word, “hot” was at 5 months old. She said this regularly and quickly accumulated new words, and at one year old had a vocabulary of at least 40 words that she said clearly and often. I would never have guessed that she had hearing loss.

Once the twins were diagnosed with hearing loss, it was obvious that we would at least need to get Eden screened, if only for completeness sake. I’ve mentioned before that the OAE screening test requires the child to be quiet and still for about 30 seconds. When you’re 18 months old and a stranger is poking a foreign object in your ear, 30 seconds may as well be 30 hours! For Eden this proved to be an impossible task for the first 4 attempts. Amongst all the chaos of the move and her sister’s new diagnosis, Eden was certainly not the center of attention in our lives, and as a result, subtleties largely went unnoticed until I really started needing to know whether she could hear. Considering that I had now become hypersensitive to anything and everything related to ears, I started to become incredibly observant to Eden’s behavior and response to sound. What I was noticing, terrified me. She had stopped saying most of her 40 words. In fact, she would only use about 10. Her favorite word had been “flower”, and I realized that I hadn’t heard her say this in a while. Now, one of the strange things that Tahlita used to do which initially got me considering a diagnosis of hearing loss, was that she often used to silently “mouth” words. I now realize that was because she thought that the rest of us were silently moving our lips with facial expressions and gestures communicating the majority of the message. Just after our move to the city, a friend observing Eden exclaimed, “Oh cute! She’s copying her sister. She’s mouthing!” I didn’t find it cute at all, and my suspicion was eating a hole in me. Eden also started “ignoring” us. Huge alarm bells!! Again, as the result of all the trauma, my emotions and thoughts were completely muddled. Part of me reasoned that understandably, I had just become paranoid, and that God would not be so cruel. But I needed to KNOW.

I took her to an audiologist for a hearing screen and voiced my concerns. I managed to get Eden to fall asleep so they could perform the test. Initially the test showed no response to the stimulus (indicating that something was wrong). The machine that was being used however, was somewhat faulty and I could tell that the audiologist was getting frustrated with it. They explained that she probably just had an ear infection and that we should bring her back in a few months to have her retested. I knew that she did not have an infection and I also knew that the anxiety of not knowing whether or not she could hear would kill me, and so I couldn’t wait that long. I also explained that I had well learned my lesson, and that if there was hearing loss, I wanted to act on it and not waste further precious time. The audiologist could sense my distress, and so in spite of a now grumpy, awake Eden, kindly agreed to repeat the test. After much effort, the audiologist handed me a short print out of “2 echoes”. They informed me that the results meant that she had passed the test, had normal hearing, and that we should just monitor her language development. You’d think I’d have been ecstatic. I wasn’t. I thanked them for their tremendous effort (it really was mammoth, as I’ve mentioned that this child knows what she wants and doesn’t want in life). I drove home torn with the reality that the professionals said that she could hear, but I knew in my gut that the test result that day, couldn’t be trusted.

A week later, I was in a speech therapy session with our twins. Our speech therapist is also an audiologist, and I had mentioned to her that I’d like to have Eden’s OAE repeated. She was very willing to help out and we were going to try to come up with a plan to get Eden sleeping deeply. That day, Graeme was not at work and had taken Eden for a drive to the shop with him. She had fallen asleep in the car! He rushed over to the speech therapy practice so that we could attempt the OAE again. I was happy to continue the therapy session with the girls while Graeme and Julie (the SLT and audiologist) attempted the OAE in another room. They were gone for ages. I just knew that it wasn’t going to be good news. Indeed it wasn’t. In spite of being in a deep sleep, and multiple attempts with a reliable machine, Eden had conclusively failed her screening test. Consequent attempts at having her in the audiology booth to assess her response to sound failed, as she was very scared of the small dark room. I ended up needing to take her to Johannesburg for an ABR test under sedation. That booking was made for 2 weeks later. Another painful two weeks of trying to account for all her symptoms as an attempt to hold onto a thread of hope, that her hearing was normal. I just couldn’t contemplate having 3 deaf children.

The day of her ABR confirmatory test came. I did not sleep at all the night before for sheer anxiety. The actual testing itself, was a very different experience to that of the twins. It was done as an outpatient procedure in a sound proof booth with an anesthetist ensuring that she was adequately sedated. The audiologist was wonderful, compassionate and kind, and another audiologist, an absolute angel from an organization that I’ll tell you about soon, accompanied me for the duration of the testing. On a whole, I couldn’t have asked for a kinder experience. After over 2 hours of testing, I was called in to have the results explained – at long last I’d have an answer! They didn’t need to say anything…again, the little jar of ear impressions on the desk told the story. A sense of numbness overtook me as I considered for a moment that this may just be all one big nightmare that I’d soon wake up from. But it wasn’t. Eden’s hearing loss was similar to that of her sisters’; profound on one side and moderate to severe on the other. Devastated by the news and yet relieved to at least know the truth, we left the audiologist’s rooms. My mind was now spinning with thoughts and questions. What does this mean for us? This is then most likely a progressive hearing loss since she could definitely access sound as a smaller baby. Am I going to cope with 3 deaf kids?

The next 24 hours before my drive back home was a profound time of acceptance. God had NOT been cruel to me. My daughters are beautiful, intelligent and determined, and somehow, in some kind of crazy way, this journey was going to turn out okay. More than okay! A sincere realization that I have been blessed beyond measure, and that I was not alone on my journey as a parent of the deaf, melted the frozen grasp of fear and hopelessness. Life would need to be embraced one day at a time and I would need to have faith that our futures were in much bigger hands than our own.